Amelia Slay

LinkedIn: www.linkedin.com/in/amelia-slay/

Project title: Working towards data-driven epilepsy care: Development of a patient-generated health data (PGHD) clinical dashboard to enhance Dr-patient communication and collaborative care planning

Supervisory team: Dr Amberly Brigden and Dr Emily Nielson

Project summary

Epilepsy is one of the most common neurological disorders in the world, afflicting approximately 50 million people worldwide with recurrent, unprovoked seizures. One of the challenges in epilepsy care is the frequent absence of the data required to inform diagnostic and/or treatment decisions - whether due to the absence of seizures during clinical examination, gaps in memory of the time surrounding a seizure, or simply due to the extended period between care planning appointments.

Elsewhere, consumer-grade personal wearable devices are becoming increasingly popular for continuously tracking and analysing one’s health. As such, Patient-Generated Health Data (PGHD), collected via these technologies, offers the potential to fill in these data gaps for People with Epilepsy (PWE) and enhance communication, collaboration and clinical decision-making.

This PhD project aims to co-create a clinical dashboard that presents these data to PWE and their care teams. To date, the clinical pathway has been mapped and focus groups held with patient and clinical stakeholders to identify the diverse needs that such technology can address. Future research will focus on collaboratively designing and then developing the clinical dashboard to provide analysis and visualisation of PGHD.

Bio

I completed my undergraduate degree in Biomedical Sciences here at the University of Bristol, where my studies and the COVID-19 pandemic fostered my interest in digital technologies for health and healthcare. Following graduation, I witnessed the potential impact of digital health solutions in my first graduate job at the local Clinical Commissioning Group (CCG). My work here focused on the development of a digital community mental health service for Weston-Super-Mare, an area challenged by high deprivation and severe mental health need. I then moved onto the Meningitis Research Foundation in pursuit of a role with greater involvement with biomedical research; as the Research Officer at MRF I was involved in communicating scientific advances around meningitis to the public, organising academic conferences/events and the awarding of exciting pump-priming research grants.

Feeling inspired and the insatiable urge to conduct my own research, I joined the Digital Health and Care CDT. Here I am co-designing a clinical dashboard for epilepsy alongside People with Epilepsy and clinicians that provides an analysis and visualisation of out-of-clinic data, aimed at enhancing clinical decision-making, and collaboration and communication between clinician and patient. My dream is to design technology that makes clinical care more efficient but also more human!

If you would like to discuss my research, I would love to hear from you!